I sometimes joke with our doctors (Maddie has way too many for a two year old) that I am just going to run away with her to an island and swear off doctors forever. This week though, we actually ran away to an island in order to see a doctor. Okay so we didn’t really run away, but we did make a decision on the fly to head down to Wilmington where Maddie’s neurologist sees patients once a month.
On Thursday, Brandon was set to take command of his new Company and I really wanted to be at the ceremony. So when we found out that Maddie’s Neuro was going to be in Wilmington Thursday and Friday, we asked my fabulous Uncle Haywood if we could stay at his house at the beach, and hopped in the car.
So instead of counting seizures at home in Charlotte, we have been down at the beach since Wednesday. The view in every direction is beautiful and Maddie is really starting to like the beach and the ocean. My mom came with us to help out and to enjoy this beautiful place.
On Thursday, we all went to see Brandon’s change of command ceremony. It was so nice to actually be able to be a part of something for his job. I used to be a pretty involved Marine Corps wife, but since the leukemia diagnosis I have not been able to at all. My mom helped wrangle Maddie at the ceremony so that she was not too much of a distraction. I just have to say how proud I am of my husband. I honestly do not know how he has done it over the last 19 months. His job is tough without the insanity that is our life right now. I have no idea how he has been able to balance the two, not to mention how he has driven over 40,000 miles in that time to commute to see us each weekend. Thank you so much honey!
For those non-North Carolinians, Wilmington is 1 hour south of Jacksonville, where the Camp Lejeune Marine Corps Base is. Brandon works there and soon we will actually have a home there. So getting to hang out at Figure 8, just north of Wilmington, means we can see the doctor, visit Brandon at Lejeune, and have Brandon come down and visit us over the weekend.
On Friday we saw Maddie’s Neurologist at the Wilmington clinic. It is always nice to see him face to face since we have been making med changes lately via phone and email. Many of us IS parents have noted an interesting phenomena about doctor visits. For some reason, after a visit to the Neuro, we usually have a renewed sense of hope. It is like the act of simply making a new plan each time gets our hopes up that this plan will be the one that gets our children seizure free. A little hope is always good, but I tried to be more realistic this time. So instead of having just one plan, we went ahead and planned the next four steps, so that as we fail things, we know where we are going next.
First plan of action (POA): Wean off Topamax, as it has done nothing except make Maddie more out of it, and reintroduce Keppra. We tried it before her IS diagnosis and may have had some control with it.
If this doesn’t help, POA 2: The dreaded ACTH, aka AdrenoCorticoTropic Hormone. A nasty steroid that I will have to inject daily into Maddie’s muscle. At her IS diagnosis, we did Prednisone instead because the response rates are similar, it is much easier to administer, and isn’t so ridiculously expensive that our insurance is going to want to fight us over it. We have to wait to make sure insurance will approve it to start, as the company that sells it requires approval before they send it out (to make sure they get paid). The company has jacked up the prices to over $25,000 per vial of this stuff, so we will go through about $150,000 of it even if it doesn’t work for Maddie. Many IS parents have written about this, if you want to be disturbed, click here or here.
The ACTH option is a pretty scary one because it was due to steroids and their immune suppression that Maddie ended up in the PICU in late March. We think we have the UTIs under control now, but we will be taking every precaution to keep her healthy if we have to go this route.
POA 3: This one is happening no matter what, but the timing of it depends on whether or not we try ACTH. We are planning a visit to Dr Chugani. He is kind of the IS guru, and is located in Detroit. He will do some additional testing and tell us whether or not Maddie could be a candidate for brain surgery. It is an incredibly scary option, but one which provides a cure for many kids. We are doing this not because we think she needs surgery, but rather to exhaust all our options. He is incredibly well known and all of the IS parents we know who have seen him rave about him. So we will get our appointment dates Monday and hope not to have to change them. ACTH interferes with the glucose FDG PET scan that we will get of her brain, so we cannot have done it within 4 weeks of our visit. So that is now officially in the works.
POA 4: Somewhere in the next few weeks to months we will try adding a vitamin called Carnitine to see if it helps at all. This is one thing her brain could be deficient in, so we will give it a try. Having a deficiency in certain vitamins and amino acids can cause Infantile Spasms, but that is rare, and finding the exact vitamin necessary to fix it is like looking for a needle in a haystack. This will be the third vitamin we have tried.
So we have a new plan (or plans) and we are just trying to enjoy the time here at the beach, especially until the hope that comes along with the new plan wears off.
A few photos:
A special thanks to Haywood because we love it here. It is truly hard not to be happy here!
Love to everyone!
Liz, Brandon, and Maddie